Monday, September 30, 2013

Just hours before the likely shutdown of the government, legislation that many anxious American veterans have been hoping for has arrived - and Congress had better pass it. Tonight, Senate Veterans’ Affairs Committee Chairman Bernie
Sanders (I-Vt) introduced legislation to ensure that the Department of
Veterans Affairs (VA) continues to make disability compensation and pension
payments to veterans in the event of an extended government shutdown.

“We must not let our veterans be counted among the House
Republicans’ hostages,” Sanders said this evening.

While many services provided by VA – including healthcare – would be protected even during a shutdown, funding for other vitally important programs for veterans are not protected. These programs include mandatory benefits for
low-income and disabled veterans, along with education and vocational rehabilitation
benefits.

“Losing these payments could have a devastating impact,
especially on severely wounded veterans who are unable to work and depend on
the VA checks,” Sanders said.

It is hard for me to imagine anyone voting against this bill, which protects mandatory
compensation and pension benefits for veterans and their families, including
benefits to the survivors of deceased veterans. It would also enable veterans to continue taking advantage of their post-9/11
GI Bill and other VA educational programs.

Sanders' bill would allow VA
to continue to pay these mandatory benefits to veterans.

This legislation is similar to H.R. 3210, passed the Senate
by unanimous consent earlier today, which mandates that pay will continue for our active-duty military in the
event of a shutdown.

I will keep you posted here on the bill's expected march to law. The original cosponsors of Sanders’ bill were Mazie Hirono
(D-Hawaii), Mark Begich (D-Alaska), Jon Tester (D-Mont.) and Richard Blumenthal
(D-Conn.).

With the government on the brink of shutting
down for who knows how long, America's veterans are trying to make sense of the conflicting and confusing information spewing from inside the Beltway. And the national media isn't helping much.

The Department of Veterans Affairs (VA) has been
sending out painfully mixed messages. Last week, the department announced that under its
contingency plan, 95 percent of VA employees would be either fully funded or
required to perform excepted functions during a government shutdown. VA stated
that all payments to veterans would be made. No worries, right? No problem, right? Wrong. Later in the week, VA dropped its
“all is well” façade like a hot potato and bluntly acknowledged that if a
government shutdown occurs and lasts more than a few weeks, the agency will run out of money for compensation and pension checks
to more than 3.6 million of our former warriors.

One would think that VA would post something prominently on its website homepage that helps explain this dire situation. But clicking on VA's home page right now, I see nothing. OK, there it is. I had to dig deep to find this VA guidance page,released Friday.

The department's reversal on the government shutdown's impact on veterans came only after staff members of the
House and Senate veterans affairs committees hounded VA suits for more information. It's a familiar scenario: getting VA to release vital information is like pulling teeth.

Meantime, some national media reports have been blurry and lazy. Some reporters got a copy
of an internal VA memo that said a government shutdown could force
as many as 62,000 VA employees to take temporary furloughs. And they ran with it. Trouble is, the memo was incorrect. VA officials now say that only about 14,000 employees
would be sent home.

Significantly, though, more than half
of these 14,000 workers - about 7,200 - will come from the
Veterans Benefits Administration (VBA), which means the shutdown, if it lasts
more than a few weeks, will have a profound impact on veterans who rely
on this money to survive.

Benefits from VBA are provided through appropriated
mandatory funding, and "that funding will run out by late
October,” VA spokeswoman Victoria Dillon told CNN. “At that point, VA will be unable to make any payments.”

VA says medical care, prescriptions, and home loan processing will continue during a shutdown. The Veterans Crisis Line and
insurance processing departments will also remain operational.

But the Human Resources Center that helps
veterans find jobs will be shuttered, and the Board of Veterans Appeals will not
issue any motions. Freedom of Information Act (FOIA) queries reportedly won't
be processed, and internments at National Cemeteries will be "conducted at
a modified rate," according to VA.

The VA will also suspend its Consumer
Affairs, Inspector General and Whistleblower Reprisal hotlines.

There are bills floating around Congress right now that would fund VA under a shutdown, including one that is awaiting a floor vote in the House and a committee vote in the Senate. We'll see if these bills advance.
Meanwhile, as this political mess unfolds, veterans across the country watch and wait. And some pols grow
increasingly frustrated. Sen. Bob Casey,
D-Pa., told reporters
on Friday, "The idea that a veteran should
have to wait for his disability check, because some Washington politician is
acting like a third-grader and engaged in an ideological stunt, is really insulting."

Friday, September 27, 2013

Social media is changing the world!! That's what people keep telling me. But is it true? Other than turning erstwhile normal 13-year-olds into zombies who post photos on Instagram and follow Justin Beiber's incoherent Tweets all day rather than finishing their homework, has the social media explosion really amounted to anything revolutionary? Actually, yes, it has. Especially when it comes to our health. A recent study by Brigham Young University found that more than 60 percent of Internet users in 2013 use social media to find health information. But my experience as a cancer patient and advocate tells me anecdotally that this percentage is even higher within the nationwide cancer community. I know very few cancer patients - even seniors - who haven't used social media at one time or another.

No, Twitter hasn't cured cancer. But cancer patients and their loved ones tell me all the time that social media has changed their lives. The most obvious change is that we're just so much more informed now. Seemingly overnight, social media has become a valuable, even indispensable resource for cancer patients seeking answers. It provides us with mountains of information about our illness, and, granted, it can be overwhelming and hard to discern and decipher. But too much information is always better than not enough. Last I checked, knowledge was still power. Social media helps us learn more about all our treatment options - including ones that perhaps your doctors haven't mentioned - and enables us to find fellow patients who have the same type of cancer. It even makes it easier for us to communicate with our doctor.

I wish I'd had social media when I was first diagnosed with stage IV cancer back in 1996. Facebook, Twitter, YouTube, LinkedIn, Instagram, MySpace, Pinterest, Tumblr, Google Plus – none of these ubiquitous sites existed then. Neither did Google. In terms of researching my cancer and finding and assessing a clinical trial, which ultimately saved my life, I was on my own. Social media has changed all that.

But arguably the most significant way in which social media has changed things for cancer patients is less tangible, but more profound: It has given us the sense that we are not alone.

"Social media has truly changed the landscape for cancer patients," suggests Ken Wisnefski, CEO of Webimax, one of the nation's leading Internet marketing companies. "Cancer support groups have been around for decades, but some people had to travel great distances to interact with their fellow patients. Social media allows you to interact with others whenever you want, and on your terms."

Ken notes that even middle-aged and senior cancer patients are now embracing social media and adapting to mobile technology.

“We've got clients, including big retailers, who two years ago were seeing five to seven percent of their traffic coming from mobile (smart phones). Now it's around 70 percent," he says. "This applies to the cancer community, as well. Social media has become a hugely important outlet for cancer patients, it's both educational and therapeutic. And they're increasingly using smart phones to get there."

Among the nation’s leading social media networks designed specifically for cancer patients is CancerConnect.com, which is used by individuals - including more than 50,000 cancer patients, me included - and by many of the nation's most prestigious cancer hospitals, including Memorial Sloan-Kettering Cancer Center, Dana Farber, The Ohio State James Cancer Institute, The Seattle Care Alliance, The Roswell Park Cancer Institute, and more.

CancerConnect was founded three years ago by Dr. Charles Weaver and his two sons. Charles, an oncologist and former cancer researcher, ironically came up with the idea as he was complaining to his two sons that they were spending too much time on Facebook.

"My oldest son had cancer, sarcoma, six years ago, before Facebook really took off," Charles explains. "We live in a small town, there are no other patients in our small town with sarcoma or kids with cancer for that matter. He went through treatment, which was surgery, and everything was fine. Four years later, I walked into our study room, and he and his brother were on Facebook. I just shook my head. I told them they were wasting their lives, yada yada. But they barked back at me and told me I didn't understand. The boys described to me how my one son could have used social media during his cancer, how he could have met other people and talked about his situation. At that point I said, 'Tell me a little more about this thing called Facebook'."

Charles says his kids proceeded to walk him through how it worked, then they sat down as a family and designed CancerConnect. "It was a family project that came from my willingness to listen to my kids in a moment of, well, rage," he says with a laugh. "They opened my eyes."

Charles says it is the little things that have contributed to the site's swift success. "We had it password protected at first, for example, but one of my sons said that if people could use Facebook to join, our enrollment would increase," he says. "This is before everyone started allowing you to join things via Facebook. My boys were ahead of the curve. As a result of that, our enrollment went up 40 percent the day we did it."

Charles and CancerConnect team - I am now a member of that team as a patient advocate and writer - did plenty of market research before launching CancerConnect asking what users seek."People want to communicate with someone in their situation, get validation of what their doctor said, and receive factual information," he says. "What was most important to them, though, was a bit surprising. They wanted the ability to give back. That has been the coolest part of this venture. The most popular feature is not even something we thought about. Giving back to others is big part of the healing process, and it is an ongoing process."

Charles says his goal with CancerConnect was to provide a "safe, secure and ad-free medium where cancer patients can connect with each other and share and ask questions."

Another recent social media phenomenon is TwistOutCancer (TOC), a non-profit founded two years ago by Jenna Benn Shersher, who was diagnosed with grey zone lymphoma, a rare type of blood cancer that afflicts fewer than 300 people in the United States.When she was going through her very difficult chemo regimen, Jenna says she felt increasingly isolated. Just months after finishing her treatment she established TwistOutCancer, which harnesses the power of personal connection and community to support those touched by cancer.

"Social media saved my life," Jenna says. "TwistOutCancer is all about people putting their own twist on cancer. It's about exchanging messages of hope, and whatever else you want to say, via social media."Another pioneer in the social media and cancer space is Liz Hart McMillan, an inspirational survivor of an aggressive form of B-cell lymphoma that kills nearly half of those diagnosed with it within five years. Liz, who was a case study in an academic journal of innovative use of social media, currently consults with cancer hospitals and other organizations that are seeking to improve their social media profile.

In 2008, she founded one of Facebook's very first cancer support groups. "Facebook is a virtual town square where folks can meet up with people from all corners of their lives and exchange any level of information they want – from everyday to emergent – at any time," suggests Liz, who currently runs a popular, informative Facebook site for lymphoma patients and survivors called Hope for Lymphoma."Just when a patient with a chronic or
serious disease is most in need of social support and least likely to get it
from real world friends and family – many of whom disappear under the strain -
Facebook comes to the rescue and provides rich communities of comrades in arms," Liz says. "This is a huge change in the lives of patients."Is social media really changing the world? You bet it is!

Jamie Reno

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Jamie Reno, an award-winning correspondent for Newsweek for 20 years, has also written for The New York Times, Rolling Stone, Yahoo News, Yahoo Finance, Healthline, People, Men’s Journal, ESPN, International Business Times, The Daily Beast, Los Angeles Times, TV Guide, Mother Jones, Sports Illustrated, MSNBC, Entertainment Weekly and USA Today. Reno, who’s won more than 150 writing awards, was the lead reporter on a Newsweek series on the 9/11 terrorist attacks that earned him and his colleagues the National Magazine Award for General Excellence, the highest award in magazine journalism. Reno is also an acclaimed author (Hope Begins in the Dark, Snowman on the Pitcher's Mound) singer-songwriter (jamiereno.com), advocate for cancer patients, war veterans and children, and 20-year, three-time cancer survivor. He lives in San Diego with his wife, Gabriela, and their daughter, Mandy.